This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.

Wednesday, April 26, 2006

Another in a string of very long days

Yesterday Eleanor was transferred from Yale-New Haven Hospital to Boston Children's Hospital where she has been enrolled in the Short Bowel Syndrome program.

Our day began in Ledyard, at home. On Monday evening the nurse told me that a Tuesday transfer was a possibility so Abby and I left home on Tuesday at 7 AM, getting to Yale just after 8 with a stop at Dunkin' Donuts (the official sponsor of the Ellie Brogan Treatment Program) for the usual breakfast of champions, a large coffee and two chocolate glazed donuts. Yeah, yeah, I know but I figure that I'll get Ellie's gut under control and then work on mine....

When we got to Yale the nurse told us that yes, Ellie was going to be transferred and would go at 12:30 by Ambulance with the Yale transport team.

Have you ever walked into a hospital and seen someone carrying a cooler and wondered what was in it? I always imagine either organs on ice or a severed head, but have learned that it probably isn't that interesting. Probably a dad with a cooler full of frozen breast milk because by 4:00 there we were in Boston, walking into the mammoth children's complex, cooler full of frozen breast milk in hand, looking for our baby.

Who had not made her triumphant arrival yet.

By 4:30 Ellie arrived with the Yale team including Joyce our medical savior from the day that Ellie was born who swooped in and packed her up to go to Yale. I told her that she didn't only help Ellie that day but coached us through a very rough time and that we appreciated it immensely. She gave me kiss on the cheek.

By 5 we Ellie's new doctors had both been in to see her and sit down to discuss her condition with us and what the plan of action was.

The doctors at Yale were great. Top notch doctors who knew tons about treating sick kids in general.

That being said, we are where we need to be for Ellie. So far each of the doctors, nurses, nurse practitioners and other staff that we have met are not only familiar with Ellie's problem, but speak about it on a level that we simply didn't get at Yale. Ellie's nurse last night old me that she sometimes loses perspecctive about how rare short gut is because she treats kids with short gut every day and sometimes goes a whole day treating nothing but short gut kids. This is where we want and need to be. No mystery about her G-tube, no inaccurate information about her condition or need for us to brief the staff. It is time to move forward and get my little girl out of this place.

Apparently one of the many wonderful powers of breast milk is that it has been shown to help short gut kids grow their super guts and help what is left of an intestine take on super powers. In the next day or so, we will begin the long slow process of feeding Eleanor and see how she does.

In the meantime, I am off to Yale again. Apparently they forgot to include Ellie's x-rays in her file and we can't proceed without them. Gib express is faster than FedEx.

Sure am glad that my iPod is all loaded up and the car adapter works so well.

1 comment:

I'm so glad that everything is working out! It definately seems you are in the right place! Go Boston! Also...I'm coming up to Boston for a scrimmage at Mass Art on Sunday! So if you need anything else the Kelly express is on call! Or if you need a diversion you can come see me get my arse whooped!